“I’d Go Anywhere for Him” – Whitnie

15Aug 2023

Q&A with Dr. Mark Levin, Pediatric Cardiologist: Prolonged QTc, Long QT Syndrome, and CCDS

Dr. Mark Levin is a board certified pediatric cardiologist at the National Institutes of Health (NIH) and the National Heart, Lung & Blood Institute (NHLBI), and has gained experience working with Creatine Transporter Deficiency (CTD) patients through his work on the Vigilan Observational Study. Dr. Levin presented at the 2021 CCDS Virtual Conference on “Cardiac Abnormalities in Patients and Animal Models of Creatine Transporter Deficiency” and a video of his presentation is available on the ACD YouTube channel.

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27May 2023

“Giant Boxes for Giant Walks” – Faith, ACD Programs Coordinator

I wish I had taken a photo of the boxes that took over my home back in the summer of 2021. At the time I was living in a tiny apartment in downtown Salt Lake City. It was my first Walk for Strength with ACD. How many boxes does it take to transport 700 shirts? I remember asking myself. Surely, it won’t be that big of a deal. Sweet, innocent Faith. Continue reading

24Mar 2023

Reflections on the CCDS EL-PFDD

By Celeste Graham, ACD Director of Education

I had always thought of the Food and Drug Administration (FDA) as a very high-level governmental agency that oversees all things safety and effectiveness, related to food, beverages, supplements, and medications… so high-level and inaccessible that they really didn’t have any interactions with the general public. Continue reading

13Feb 2023

ACD Fellowship Projects Make Progress in 2022

The Association for Creatine Deficiencies (ACD) is playing an active role in funding research to find a cure and treatment for Cerebral Creatine Deficiency Syndromes (CCDS), and a cornerstone of this effort is the ACD Fellowship program. Continue reading

07Dec 2022

“Our Experience of CTD” – Kayla

We’ve shared that Creatine Transporter Deficiency (CTD) can cause seizures, speech, intellectual, and motor delays, ADHD, and autism in people, but it can vary greatly from person to person. So what does CTD look like for our son, Crosby? Continue reading

05Nov 2022

“Awareness” – Lacy

I find myself thinking a lot about awareness. It has been a buzzword in our lives for the past five years since we found out that Jacob has Creatine Transporter Deficiency. It is a diagnosis we never thought we would get mainly because we had never even heard of it. Continue reading

04Dec 2016

Whitnie & Reid

“I’d Go Anywhere for Him” – Whitnie

Every time I pack my bags I get this funny feeling. It’s true that I hate leaving them behind, but I can’t not go. I feel this calling and it’s bigger than me. It’s bigger than any of us. I’ve traveled to ten cities and two countries for CTD, but I’m not complaining. I’d go anywhere for him.

Right now, I’m sitting here on an airplane bound for Paris and I have butterflies in my stomach. I’m uneasy alright. But, it’s not because I’m speaking publicly at a conference in two days. That’s something I’ve done more times than I can count – and I’m prepared.

I know how important this time is. I know who will be there and how many people need me to bring my A-game. But, there is just one person that I can’t stop thinking about.

three playful children

Photos by Sara K Blanco Life Style Photography

He’s home right now looking for me and I’m not there. He wants to honk my nose, but I’m a thousand miles away. I’m uneasy because he’s counting on me and I don’t want to let him down.

When Tuesday rolls around, the butterflies will be gone. I’ll get on stage and deliver like I’ve promised him. I’ll make it count like I always do. It’s what I have to do – for Reid and all the others just like him.

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Disclaimer: All thoughts and ideas expressed in the Creatine Community Blog represent the individual blog contributor's opinions and not those of the Association for Creatine Deficiencies. The ideas expressed in the Creatine Community Blog, and any other locations on the creatineinfo.org website, should never be construed as medical advice, even if the information relates to actual health care experiences of the contributor. Individuals should always follow the instructions of their physician and make no changes to their care unless instructed to do so by their physician.